Maneuvering the winding roads of Highway 49 was challenging, even more so considering how tired Jeri was, but the beautiful silence propelled her forward. Her son’s autism didn’t often offer many quiet moments, but the hundreds of miles they’d traveled so far in the car caused Andy to sleep, and with sleep came glorious peace. It was in those moments, that Jeri could look at her son and really feel how deep her love was for him. It was also in those moments that Jeri rushed to get things accomplished, so whatever maternal glow she had was quickly replaced by lines of stress and fatigue. Jeri rarely slept herself anymore, but she knew she had to make hay while the sun was shining, or while whatever bare light bulb overhead illuminated her efforts.
It had been nine months since Andy’s diagnosis of autism was handed down by University Hospital and their panel of highly qualified developmental pediatricians, and Jeri felt as though the nine months had been a gestational period of another sort. In three quarters of a year she found she had to alter her concept of whatever plans and dreams she’d originally had for her son’s future and pushed forward, despite the pain. She also watched as her husband slowly retreated into a world of his own, a world that made no room for Jeri or Andy. So, she planned for a new life – a life she knew she was going to have to coordinate in order for her son (and herself, really) to survive. Just the way they say having a baby changes everything, the past nine months had proven that Jeri’s world would forever be altered by the announcement of autism.
The first pamphlets and books that Jeri was given to read about autism were overwhelming. She had no idea that autism took on so many different forms and characteristics. Everything she read by the experts said that not every child would display every sign or marker, that they would instead have some and not others “under the umbrella” of autism. It didn’t make her feel any better either that the experts presented multiple therapies and dietary restrictions, with the caveat that they work for some children, but not for others. It seemed as though the only thing the experts could agree on was the word: autism. Prior to Andy’s diagnosis, Jeri had no real point of reference, other than the movie “Rainman” and an obscure Elvis Presley film where a little girl kicked and screamed for hours while Elvis held her and repeated, “I love you” over and over in an attempt to calm her down.
The word “autistic” never occurred to Jeri when she dragged her son kicking and screaming into the concrete medical building at the university. She just thought Andy was being defiant and that maybe the arguing between her and her husband since Andy was a colicky infant was somehow affecting his ability to speak. She had only taken Andy to University Hospital in the hopes that they would tell her it wasn’t her fault, like her husband had been telling her it was. Brian was constantly telling Jeri that she wasn’t firm enough and didn’t take the time and care needed to discipline the boy correctly or potty train him properly. He’d gone so far as to make fun of Jeri for wanting to be a stay-at-home mom, because she “obviously wasn’t very good at it.” When Andy would tantrum, Brian would yell at her and ask her if she could even see what she was continuing to do to their spoiled child. While other children may have experienced the Terrible Twos for a year or so, Andy’s went on until he was almost five years old leaving Jeri to believe he wasn’t going to start kindergarten like the other children in their neighborhood, because of his violent tantrums, lack of speech and inconsistencies in basic bathroom skills.
Sitting in the doctor’s office atUniversityHospitaland hearing the words “Your son has autism,” Jeri felt she’d been handed a mixed bag of emotional snakes to deal with. On the one hand, there was the benign relief of knowing what was going on with Andy was nobody’s fault. On the other, the poisonous bite of the doctor’s words, telling her life would never resemble anything like the bright future Jeri had envisioned, brought heavy darkness and pain. According to Dr. Tyler, the next two decades would most likely be filled with assessments, therapeutic modalities and things Jeri had never heard of were all going to take the place of t-ball, boy scouts and lazy summer days at the pool she’d dreamt of. Andy, she was told, would most likely “diagnose out” with OCD (Obsessive Compulsive Disorder) and have poor social skills, no eye contact and obsessive, quirky areas of interest. Blinking through tears, Jeri jokingly rolled her eyes and said, “So, you’re basically telling me that I’m facing a future filled with high water pants and Star Trek conventions.”
Dr. Tyler blankly stared at Jeri as the observation glass behind her began to bow and flex. “Will you excuse me for a minute?” She stood and walked out of the room. Andy sat on the floor lining up every red block he could find in a straight line along the back wall.
Jeri sat staring down at the light gray overalls she’d thrown on that morning, having taken Andy out to play in the dirt while she weeded to keep her mind of the afternoon’s heavy appointment. The fabric of the chest panel had turned a damp black, saturated with the silent tears rolling from Jeri’s chin.
The door opened slowly and Dr. Tyler walked back in to speak to Jeri. “I’m so sorry. I had to have a word with my students.” She motioned to the glass window. “You know,UniversityHospitalis a teaching hospital and your comment took the staff by surprise. They’ve never heard a parent react quite like that before.”
“Well, it is true isn’t it? It’s not as though you’ve handed me the worst news ever. It’s not a diagnosis of a rare disease or, God forbid, a terminal illness. Andy’s life isn’t over.” Jeri’s mouth twitched to the side in a half grin, thinking that maybe just hers was. She inhaled deeply and blew out an even deeper sigh. “It just means that we’re going to need to re-think things a little.”
Hugging her clipboard the doctor smiled. “Yes, that’s correct. All right then, I believe we’re done here. Do you have any questions?”
Jeri frowned. “Questions? Jeez. Yeah, you bet. In fact, I have a ton of questions. What do we do now? Are there classes for Andy? Do we have to take him anywhere special to deal with this? Do you think he’ll be able to go to public school or am I going to have to think about private school? I guess my main question is: What do we do next?”
Dr. Tyler hung her head. “Well, I’m so sorry. You have to understand, that autism is not like other medical issues. There are many schools of thought and quite a number of avenues that parents take when faced with this diagnosis. I cannot really make suggestions, as the course of action you choose is up to you. But, there are some helpful pamphlets in the lobby that you can look at to see what some of your options for various treatments are.”
Eyes wide, Jeri found herself getting angry. “What?! What do you mean? No-no, no. You mean you’re going to let me leave here without some kind of a prescription of what to do? No guidance whatsoever? Are you kidding me?!” More than a little angry, Jeri stood up.
“I could buy a new, really convoluted cellphone and they would at least give me a booklet about how the damn thing works and what to expect!” Hearing his mother’s voice rising in pitch and volume, Andy began rocking back and forth, making a chirping noise which had earned him the nickname “Bird Boy” by the neighborhood kids.
Jeri grabbed Andy’s hand and headed for the exit. “Thanks a lot. You’ve just altered the complete course of a family’s life and now you’re telling me it’s up to us to not only find our way, but make up the map as well. This is just unbelievable. Isn’t your motto supposed to be something like Primum Non Nocere: First do no harm? Well, I’m sorry ladies and gentlemen of the diagnostic gallows – today you failed miserably.”
Standing in the hall, Jeri closed her eyes and gasped for air, embarrassed, realizing that she’d spoken solely out of anger and hurt, something she ordinarily didn’t like to do. Her own household had been filled with strife and confrontations and she swore hers would be different. One reason she’d married Brian was because he wasn’t confrontational, but time taught her that passive-aggressive behavior could be even worse. She stood, softly banging her head against the wall, almost understanding why Andy engaged in the self-injurious behavior of head banging. It felt, strangely, comforting.
With a whimper, Andy pulled on Jeri’s sleeve, indicating that he wanted to ride on the elevators. He started moaning and Jeri could hear his pitch rising higher, a surefire sign he was ramping up to a tantrum. Placing her arm around him, they ran down the hall, Andy running all the way on his tiptoes, just as the doors were opening and jumped inside. Turning his head, but not his eyes, toward his mother Andy smiled. Apparently, they both were under they impression that they’d escaped something terrible and maybe, just maybe, they had.
Now, with only the winding roads of the highway to think about, Jeri’s mind wandered to thoughts about what was next, literally down the road, for her and Andy. She’d made a decision that it was going to have to be the two of them against the world, since Brian had decided (given up?) that Andy’s care was best left to Jeri and that there was no room left for him. Brian had agreed to help her financially until she got on her feet, and once she was employed and Andy was in school, they’d share the expenses. Despite wanting to tell him to shove it in his ear, Jeri agreed to the arrangement. After all, when it came down to it, she figured it was literally the very least he could do for his son, since he’d abandoned all hope in general, throwing the baby out with the bath water, so to speak. And if he’d ever had a concern for Jeri and the incredibly difficult and emotional parental mountain she was about to climb solo, he never showed it and certainly never expressed it. Now, with all of their worldly possessions crammed into their old Forest Green Ford Explorer, Jeri and Andy were lacking only pith helmets to complete the picture, as they really were explorers, on the road to unchartered territory.
Jeri smiled at the thought that the territory was not completely unchartered. She had been to Columbia as a young girl on a field trip to study California history in the 4th grade. A few years later, when she was in junior high school, her parents had taken her back for a weekend vacation because an old family friend had spoken so fondly of what was his childhood home. Jeri remembered how they had stayed at the City Hotel and she felt as though they’d all been sent back in a time machine to the 1800’s, with its opulent Victorian furnishings and careful attention to historic detail.
The center of town,Main StreetinColumbiawas right out of the movies, a long dusty street with Western-styled buildings and big beautiful trees spreading their branches to provide shade to the buskers in cowboy hats playing harmonica, fiddle or guitar. There was music and the smell of Sassafras in the air. It was a magical place to be and Jeri loved it. She had tried to take Brian there shortly after they were married and he hated it. Having been raised in upstate New York with lush, rich green foliage and he found the rugged terrain of California ugly and uninhabitable, saying that the only gold left was the dried up, old dead hillsides. Jeri realized then, that she should have known they could never grow old together. She was a Californian through and through and she loved everything about the scrub oaks and imposing hillsides with their rough rocks and wildflowers. She found it suited her, practically calling out to her native soul.
With only three memories of the area to go on, Jeri questioned her sanity in deciding to move to this area of Northern California, but she’d had enough of the city she tried to call home for the last dozen years and knew that it would be best for her and for Andy to go someplace smaller, less populated and not so hectic. When she told Brian what she was thinking of doing, he seemed almost relieved. He finally admitted what Jeri had known all along, that he wasn’t capable of dealing with the responsibility of a wife and child and was completely emotionally unequipped to handle a disabled son. Jeri recalled wincing when he used the word disabled. She knew that Andy was locked away in his own world, but she felt he was more than able to feel, be taught and more importantly, be loved. Brian couldn’t understand that and Jeri knew in her heart that he was the truly disabled one.
She left Brian on a windy high-desert night and took Andy to her friend Dena Shea’s house. It was easily one of the roughest nights of her life; between the howling wind and Andy’s non-stop tantrums, she didn’t sleep at all. Andy was extremely sensitive to sound and smell and with the whistling and roaring going on outside and the smell of Dena’s three cats, two small dogs and cockatiel swirling inside, Andy was in agony. Jeri had held Andy all night on the sofa, with her legs clamped over him to keep him from running away or wandering away in the middle of the night. In their apartment, Jeri had found Andy outside two different times, once at 1am and the second time at dawn, so she had installed a latch six feet high up on the door to keep him in. Her friend Dena didn’t have any two-legged Houdini’s to worry about in her home, so Jeri did what she had to do to keep Andy safe in this new loving, but terribly hostile (at least to his senses) environment. Plus, holding him this way during his screaming, she was certain he would eventually wear himself out and finally go to sleep.
Sleeping in fits and starts played tricks on Jeri’s mind. She dreamt that Andy hated the Gold Mining Country and told her so. When she woke that morning, Jeri stared at her sleeping son and wept with joy at the thought of her son speaking to her, even in anger. According to one book on autism, she learned that while Andy did not have self-expressive language what he did have was called echolalic speech. If you asked him, “What’s your name?” he would repeat, “What’s your name?” with the same inflection and tone you’d just used. He never asked “Why is the sky blue?” like other kids. He would stare up at the sky and quote dialogue from movies and television shows or recite numbers over and over. It was a full year before Jeri realized that Andy’s numbers were grouped in sevens and when she started dialing them, they were the phone numbers for pizza places, plumbers and electricians – all phone numbers Andy had memorized from vehicles they’d pass on the roads.
Driving in the cool, dark night Jeri cracked the window open for some fresh air. They had long ago passed through miles and miles of cattle land, so she was confident that the strong odor of steer manure was gone. Sure enough, the night air smelled of green trees and the occasional scent of a fireplace. It smells like home, Jeri thought to herself. She wasn’t exactly sure where their home would ultimately be, but for the next few weeks it would be the Fallon Hotel. She didn’t really remember much about the Fallon Hotel, other than it was down the street from the City Hotel and that it was connected to an ice cream parlor and theatre. She had seen a melodrama there with her parents, complete with the mustachioed villain and damsel in distress and loved the audience participation; booing at the bad guy and cheering for the hero. It was such a fun night, sweetened by the addition of one old-fashioned ice cream sundae with three spoons clinking around the dish in a room filled with laughter. Jeri wondered if she would ever share such an evening with Andy as he grew older. Would he ever understand and appreciate all of the sensory delights of a night like that?
Rounding the corner onto Parrots Ferry Jeri knew they were getting closer to the hotel. Her stomach flipped with excitement and anxiety over what would come next. Her father had always taught her to plan, but to never plan the outcome and with a son like Andy, it was advice taken to heart, since every day had no definitive rhyme or reason. The owner of the hotel had given her a really good rate since it was off-season and she knew that not too many tourists would be in the area during the late fall or winter, which would keep hotel hubbub at a minimum. A low body count was going to be important for Andy’s sake. Loud noises and overwhelming smells, like perfume and sunblock, could trigger tantrums and the fight or flight response in Andy and it wasn’t always easy for Jeri to reel him back in. As it was, Jeri was concerned about that the old hotel might have a musty, dusty scent but felt comforted that there would be no kitchen with wafting garlic or simmering onions to deal with.
Within a few miles, they were onHistoricState Parkland and passed the signs at the cross streets saying “Do Not Enter – Horsedrawn Carriages Only”. Jeri had forgotten about the horses. Horses meant three things: horse manure, horse fur and horse flies. Andy had gone to a petting zoo one time and that triple combination in the ponies had left him in hysterics. While other children ran around laughing and smiling, Andy and his mother had run away, the two of them in tears. Shaking her head, Jeri was thankful that maybe, with the cooler temperatures, it wouldn’t be too bad this time of year.
The gravel of the parking lot crunched and rumbled beneath the Explorer’s tires. Any minute now, Andy would wake up so Jeri quickly snapped on the radio, hoping the classical music would be soothing to his ears when he opened his eyes. Stopping the car directly behind the back wall of the small hotel, Jeri sighed, put the parking brake on and waited for her son to wake up.
It only took a few seconds before Andy began blinking and turning his head, looking sideways to assess his surroundings. It was dark and cool inside the car, with no strange smells or noises to assault his senses. With a quick glance at his mother, he began pulling his body forward in resistance to the five-point harness of his car seat. Andy had never liked the car seat and its restraining straps, and this was the fourth in a series of seats that he had somehow managed to wriggle out of. The first time, Jeri was driving northbound along on the 405 Freeway at 70 miles an hour when she glanced in the rearview mirror to see Andy standing at the window, holding the handle above the window – like a little commuter on a bus or train, a wide grin on his face, happy with his accomplishment and his freedom. Thankfully, the fourth seat was a charm and had proven to be inescapable. Jeri often found herself driving an angry, head-banging Andy around town, minus the blaring heavy metal music to accompany his movements. There were many times that even the shortest errand would involve non-stop screaming until Jeri pushed the release button on the car seat. Then, once sprung, Andy would flail and kick, as though he was attempting to release all of the pent-up energy he’d stored up in his limbs while they were imprisoned. This night was no different. He’d been asleep for approximately 150 miles, but once his eyes were open and he realized the car had stopped, Andy started hitting his head against the back of the car seat and began howling as though he was in pain.
“Andy, Andy, Andy.” Jeri said to him quietly, knowing that he couldn’t hear her, but it was more of a calming tool for her, than for him, anyway. “Mommy will let you out, just give me a minute.”
Continuing to thrash and squirm, Andy paid no attention to his mother. Jeri opened her car door and stepped outside. As the driver’s door swung shut, Andy’s screaming was muffled and Jeri sighed. Lately, she found herself lingering outside of the car instead of rushing to open the back door to disconnect Andy’s seatbelt. There was no rush. No matter how fast or slow she was in retrieving her son, the fight was far from over. Jeri would have to hold Andy tight, squeezing him until he calmed down enough to not run away. For now, he was smaller than her and manageable, but Jeri worried about what it would be like in a few years down the road when he was on his way to one hundred or two hundred pounds. She worried a lot about what would happen as her son grew taller and stronger, which brought tears to her eyes and was not the way it was supposed to be.
The seatbelt opened with a loud click and Andy jumped, not so much into his mother’s arms as at them. For a few minutes they sat together in the back seat of the car, with Jeri rocking her body back and forth, because she knew it was a motion that seemed to be soothing to her son. Eventually, screeching and crying was replaced with whimpering and moaning, sounds that were much more manageable to Jeri and she began to release her grip of Andy and began to pull at various bags in the back seat. Like a pack mule, she gathered all the bags she thought she could handle in one trip and held onto the back of Andy’s shirt with one free finger. She knew she was taking a chance, because Andy had, on more than one occasion, wriggled out of his clothing to run away from his mother. It seemed to Jeri that Andy was always in fear for his life, constantly trying to run as fast and far away as he could – but she never knew from what or who. She thought that maybe there was a chemical imbalance in the brain that kept the cortisol and adrenaline hormones flowing constantly through Andy’s pint-sized body. Jeri thought of how frightening the world must be to him. The books she’d begun to read about autism said that “people on the spectrum” lived in a body where all of their senses were being assaulted at once. She could only imagine how it must feel to constantly live with the driving need to get out of your own body, mind and soul. Tears fell on her cheek as she felt the overwhelming pain that her son could not express.
Mother and son walked unsteadily through the parking lot, Andy on his customary tiptoes and actually managing a little better than his mother, over large rocks that they could not see under their feet. As they approached the wooden stairway at the back of the hotel, Jeri noticed small lights overhead that illuminated the remaining path to the front of the Fallon Hotel. When they arrived at the front door, Jeri paused, glancing through the wavy, antique glass window into the hotel parlor at the beautiful old wallpaper, picture frames and furnishings inside. It looked so peaceful and inviting, which only led Jeri to wonder how soon it would be before she and Andy were evicted. They hadn’t even checked in yet, and all Jeri could think about was how Andy’s behavior might get them kicked out. Still, she inhaled deeply as she reached for the brass doorknob.
As the door swung inward, a small bell jingled from above. The noise immediately caught Andy’s attention and he stood perfectly still as the door shut. Jeri set all six bags she was carrying down on the floor near the desk and decided that it was safe to leave Andy near the door, since he was transfixed by the tiny, still trembling bell.
Jeri approached the woman at the window of the registration desk. “Hello! My name is Jeri Jacobson and I have a reservation, well actually, I guess it’s more of an arrangement, because my son and I might be checking in for a bit longer than the average guest, I guess you’d say.”
The woman behind the desk began shuffling through papers. “No, that’s not something I would say. But somewhere here in this mess is a paper from Mr. Dane saying that “It Is So”. So, give me a minute to find it and we’ll get this thing, your arrangement, sorted out.”
Jeri half-grinned, wondering if the woman was being sarcastic or flat out rude. Wearing a dress that was in keeping with the early 19th century furnishings of the hotel, the woman also wore her hair up in a bun that Jeri thought just might be a smidge too tight, if the woman’s personality was any indication. As if listening to her thoughts, the woman looked up at Jeri with a sneer and said, “Riiiight. Okay, then. You’re the woman who is going to be staying with us based on the weather rates.”
“Weather rates? What exactly does that mean?…” Jeri took a quick glance down at the woman’s name tag. “Miss Evelyth, is it?” Jeri smiled at the irony of how closely the woman’s nametag resembled Evil It.
Miss Evelyth frowned at the use of her name, and Jeri realized she’d most likely forgotten that she was wearing her name right there on her lapel for all the world to see. “Weather rates, weather rates. It means that Mr. Dane has decided that you are going to be paying a daily rate of whatever the daily temperature high is. He’s put you upstairs in a pretty nice room with a view of the courtyard, and considering it hasn’t gotten above 55 degrees in the last week and we’re now expecting a cold spell, you are in the money. Honey.” The woman slid a paper onto the counter and with a slightly snarky flourish, presented a pen that had a long feather taped to the side, most likely in that hopes that it resembled an antique quill, thought Jeri.
Signing the paper and glancing back to check on Andy, Jeri was surprised to see that Andy had not moved from the door. He no longer stared up at the brass bell, but instead had his gaze fixed at something in the hallway leading to the back door. Jeri leaned over to see what it was, but there was nothing there but a glowing exit sign. Jeri figured that it was either the lights in the hall or the exit sign that had caught his fancy and turned back to Miss Evelyth who handed her keys to room #108.
“Listen, would you mind keeping an eye on my son while I run these bags upstairs. Something obviously has caught his attention and I don’t think he’s going to go anywhere and it would really help me out.”
Miss Evelyth wrinkled her nose up in a weird sort of smile snorted. “Sure, but I ain’t no babysitter lady. And as of tomorrow, I am outta here and on my way toFlorida. So don’t you go thinking you have a built-in good thing here where I’m concerned.”
“Oh, I appreciate that.” Maintaining civility, Jeri thought better than to snort back at the woman, and found she smiled in genuine appreciation as she ran up the stairs two steps at a time to deposit the bags in the room as quick as she possibly could. Reaching the top of the stairs she glanced to the immediate right, found room #108 and turned the key with a loud clanking noise. The door opened to a beautifully appointed room. There was a six-foot tall headboard positioned behind the double bed and an ornately painted kerosene lamp that had been electrified at some point, lighting the small room. The walls were the color of a bright summer day, light blue and it was a truly cheerful place to be. Jeri hoped that Andy would appreciate such a soothing tone. In the corner was a small sink with brass fixtures set beside a door, which led to a pull-chain commode. Between two six foot tall windows was a handsome 19th century washstand with two baskets filled with towels, soap and foam slippers. Jeri walked over and flushed the pull-chain toilet to see what kind of noise it made. It emptied with a relatively quiet swooshing and re-filled quickly without any obnoxious clattering that would upset Andy.
Jeri turned quickly and headed downstairs, mentally calculating how much time she was gone. It was quiet downstairs, so she figured that Andy was still in the same spot, most likely staring at the lights in the hallway. When she arrived on the landing, she was surprised to find him near the desk where Miss Evelyth was handing him a candy.
“I hope that’s okay. I only gave the sweet boy what he asked for.” Whatever grumpy, pained expression Evil It had been wearing earlier, it had been replaced by a beatific grin that seemed somehow all wrong sitting on the woman’s face, yet absolutely all right when it was directed at Andy.
Running up to Andy, Jeri said, “What do you mean, he asked for? He doesn’t talk.”
“Sure he does. The lil’ darlin’ gave a bit of a cough and asked if a ‘little nipper might have some Horehound Candy’, so I gave him piece, it’s no big deal. Happened to have it right here in the drawer anyway. Town’s full of it, being a historical site and all.” Ms. Now Not-As-Evil-It patted Andy on the head and he smiled, all the while looking sideways at no one in particular.
Shocked, Jeri sat down on a chair near the desk. “No-no. You must have imagined it. He has never asked for anything. Andy has no self-expressive language. I’ve tried forever to get him to say simple words, like juice or milk or water. Nothing. Not even one syllable.”
Evelyth chuckled. “Well, maybe he didn’t really want any of those things. He just wanted him some Horehound Candy, Miss.” She turned to walk down the hallway, dismissively waving as if to make her new guests magically disappear, talking as she went. “Goodnight, you two. Now, I’m sure you’ve already been told, but if you want to, you can walk down to the City Hotel in the mornin’ for breakfast. And don’t expect eggs and bacon. It’s a Continental thing, but it is part of your package here at the Fallon Hotel. For the most part, it’s pretty good eatin’ and kind of healthy. Which I sure don’t plan to have any part of in Florida, I can tell you that, except maybe some of their famous orange juice. That, right there, is gonna be healthy enough for the likes of me.” Her voice trailed off as she tottering down the hall and again gave a half wave as she disappeared into Room #13, clearly labeled the Night Person’s Room.
Shaking her head, Jeri realized the woman wasn’t hitting on all cylinders and had surely just imagined Andy asking for what did she say? Horehound Candy? She vaguely remembered it being sold in large barrels in one of the mercantile stores in town, but she’d never tried it and knew she had never, ever spoken of it. She took Andy by the hand and with more than a little fatigue apparent in both of their steps they headed up to their room, Andy on his usual tiptoes.
I am waiting for chapter 2.
:^)
Love it T!! Can’t wait to read more…